How I went to Key West without Lymphedema compression hose for a week.

 My week of vacation without wearing compression hose and how I came home with only minimal swelling.

My husband and I went to Key West, FL for a week June 26-July 3, 2013 and except for wearing my compression hose on the plane, they stayed packed away for a week.  This is the second year that I have given myself a week vacation from my compression hose, and I caution you as you read this to look at the possibilities and see if you are able to build up to this or even go a couple of days without your hose.  I was diagnosised in 2004, and very closely monitor and maintain my full body lymphedema on a daily basis.  This works for me so that I know what I can get away with at times and also so that I know if my LE swelling is maintained.  Closely monitoring your measurements and skin condition, is a must for lifetime management, because you have to know what works and doesn't work for your body, as it is different for all of us.  

Several days before my vacation, no matter if I am riding in a car or flying, I take it easy and do not schedule any appointments or big chores.  I wear my reid sleeves more around the house and keep my legs up.  If I am flying I wear my reid sleeves on the flight.  This year we took a Delta flight instead of Southwest and it was the first time I did not have room to wear my Reid sleeves on my flight and the pain was horrible and almost unbearable, the worst was when the plane was decending.  Extra pain meds did not even help, so from now on I don't care what I need to do, I will wear my Reid Sleeves, because it makes the flight bearable.  When I go by car I keep my legs up on the dash or in the backseat and stop frequently for stretching.

As soon as I got to my room in Key West, FL it was hot and the hose had to come off.  Key West is very humid and the temperatures are in the high 80s or 90s, so humid that we sweated thru everything we had(yuck).  The island is very small--only 2 X4 miles, so we did not rent a car and chose to walk and bike everywhere.  We remained active thru the week, but by closely monitoring my limbs for swelling, taking breaks, and sometimes just not pushing it if my pain became too much.   I was able to be comfortable the majority of the days.  I was in the water a lot and when you are in the water, the water acts as compression, so stay in those swimming pools, lakes, and oceans.  Also, another added benefit is that the salt water is great for killing bacteria on our LE limbs.  I normally take 2 Extended release 40mg Ocoytins a day and take another as needed pain medicine.  During vacation since I know I want to be active and I only allow this once a year, I take extra as needed pain meds, so that I can enjoy my activities.  I normally do not take many as needed pain meds, but my doctor told me long ago, if you need to take them to do an activity you would miss doing otherwise then that is what the pain medicine is there for.  During this week I was able to snorkel 3 times, learn to scuba dive and take 2 one hour scuba dives to the Key West Reef(3rd largest in the world) jet ski, parasail, lay on the beach, swim in the ocean, walk around and sightsee, and bike.  I can honestly say, this was the best vacation of my life and worth sacrifices I made to enjoy myself.  I brought my flexitouch machine and my reid sleeves with me and while I was in the room I wore my reid sleeves and kept up with my daily cycles on my flexitouch machine and was able to come back with only 1/2-1 inch difference in my limbs, which I have been working on since vacation to get them down to where I try to maintain them.  I did have another glitch in this plan because of Delta.  They left my bags with my flexitouch and reid sleeves outside in the rain and they were all soaked when I got home and it took 2 days for them to completly dry out, delaying me working on getting my limbs back down to size, but now that they are dry, my swelling is coming down again.  I will continue to take these yearly 1 week vacations from my hose, as long as I am able to manage this treat, without putting my body in jeopardy. For me, knowing my body and what it needs, allows me to effectively manage my Lymphedema, while still living my life.  I know I need to wear my hose and daily management is very time consuming, it is worth it when I can take a little holiday and get back on track.

Importance of a Routine Physical for Adults, even if you have a chronic illness

I have a chronic illness, so I seem to be going to one doctor or another at least once a month during the year.  I also see my primary doctor every 3 months, for pain medication follow-up and a check-in with how I am feeling.  One doctor oversees some labs and medicine, but another may focus on something else; which is why once a year I schedule a routine physical/pap smear with my primary doctor.  I make sure she takes labs for everything I am being treated for, but also labs you would normally get taken at a routine physical.  I schedule my routine physical and also my yearly mammogram in May each year, so I can keep track of when I need to schedule from one year to the next, but I could also say I do it so I know how my health is when I greet my birthday that year on June 1st.

My labs have been all over the place, since I had a gastric bypass in 1996, so I am use to seeing highs and lows all over my results.   During my routine labs, my primary doctor became concerned because my platlet count was sky high and she performed a Hep C test, which was negative. She wanted me to have a Liver Ultrasound asap, to see if I had any problems with my liver.  I scheduled the appointment and was surprised at how painful the ultrasound was on my right side, in fact I was still sore the following day from the ultrasound, because she was having to press so hard to get the pictures. That afternoon, my primary doctor calls me with a new diagnosis, like I need another and I hate the name as well, fatty liver.  It is not from drinking, as I don't drink.  Not sure why I have it, but I do know after having the gastric bypass I have many vitamin deficiencies.  I have lost weight the last couple of years and continue working on getting as healthy as I can be, so understandably this was not great news for me.  However, it is information I need,so that I can try to reverse the affects of fatty liver.  So I now have a new diagnosis to add to my list: Lipedema, Lymphedema, Hypothyroidism, Low Vit D, B12 deficiency, anemia, depression from chronic illness. 

Good news though, is that my mammogram, bone density(1st time having test), and pap all came back fine.  Knowledge is power, so even though I may have new diagnosis to manage, at least I know about it, and it is not sitting in my body undiagnosed and perhaps getting worse.  So now I am ready to greet my 48th birthday tomorrow, knowing where my health stands....having my Routine Physical was a priceless gift for me and my family, so Happy Birthday to me!

Received new model of Flexitouch machine.

I have been using the Flexitouch machine for over 4 years now and it has changed my daily management of lymphedema for the better. I have lost over 70 pounds and have been able to keep as much mobility as I can. I have been having increased lower back pain since my fluid has decreased, and needed to address this issue, without increasing my pain meds. I was happy to learn that I was eligible to receive another machine and the pieces had improved coverage. I have Anthem FEP and my copay was 15%. I had to get all new equipment for all 4 limbs and the main unit. My 15% copay was $840.00. I received my new machine in the mail on Monday April 15, 2013. The Flexitouch rep stopped by the next day to help me set up the machine. I have been using the machine for a week now and want to share my initial thoughts. I was surprised at how small the box was that I received with my machine and all pieces. I pulled out the machine and it was probably 1/3 lighter than my previous machine. I also received fewer pieces, since they combined the trunk piece, so instead of 1 trunk piece for each limb, 1 trunk piece is used for every limb. This trunk piece is taller than the previous one and comes up higher on my stomach and back. It comes up to right under my bust and half way up my back. It also is designed to address genital swelling, which was not addressed with the old machine. The full leg piece goes from your toes up to the top of your thigh. I am able to get this piece pretty snug and I can already see a difference on my legs. The previous pieces was a toe to knee piece and the knee to hip piece. The new pieces allow overlap, so that all limb areas are covered. My treatment plan is to do a full leg cycle a day and then follow it up with a 30 minute cycle using my trunk piece, but folding one of the thigh flap ups over my genitals. I will include pics soon, showing me in the new pieces. I use 2 pieces in addition to the trunk piece on each arm. Again, the new pieces allow overlap and a snugger fit. I was starting to have issues with increased swelling along my my bra line and under my arm pit and the new machine pieces cover both of these areas. I think the big difference is that the old pieces ended and did not have enough overlap in key areas, such as at the top of the arm at the armpit and the chest piece. I have noticed that a small swelling pocket under my left breast has greatly decreased, because I am able to fit the pieces snug on top of the spot. I have only been using this new design for a week today, however, it is showing lots of promise in addressing my increased swelling areas. I do one 60 minuted full arm cycle in the am before getting up and then I do the opposite leg at night. The full leg cycle at night is 60 minutes, followed by a 30 minute trunk genital cycle. Overall I use the machine 2 1/2 hours a day. I have decreased the amount of extra pain medicine, but not totally eliminated it, in the last week and that is a big plus for me. I will update thisbpost with pics of me wearing the garmentsa and also any other progress I make using the new garments. So far, so good!

Going from a mostly "invisible disability"in winter to a "highly visible disability" in the summer

 

 

Our weather in Virginia this Spring has been colder than normal, so I was so happy this week when we finally warmed up enough for the official start of shorts weather for me.   During the winter I wear long sleeves and pants, so for the most part unless you know me, you would not know I am disabled.  Sometimes I limp when my feet are hurting me, but lets face it in today's world a lot of people have feet problems.

I use handicapped parking every day when I go out, even when I am having a good day and not limping.  Why?  Well if I want to continue to have a good day, I have to limit my walking.  So that I can get the most out of my day, I have to pace myself and if I park further away in the parking lot, then I have to limit my walking in the store, while I am shopping or wherever I might be.  My feet sometimes will turn while I'm walking and I have to be able to get back to my car as soon as I can, because it is so painful to walk.  If all the handicapped spaces are taken and there are "for moms with small children" or "employee of the month" sorry I'm going to take it, as both of those groups can walk okay.

Now bathrooms when there is a line are still tricky for me.  I love when the handicapped bathrooms are separate from the regular ones, because I can go straight to it; however, if it is together with the regular bathrooms and their is a line I really feel I should be allowed to go straight to handicapped behind other people that use handicapped.  My dilemma is I cannot bring myself to speak up and ask who is in line for just the handicapped stall and if no one, walk on by all of them to go.  Standing still is extremely painful for me so normally I just suffer in silence.  I have to use handicapped and you would understand why if you ever had to pull up my compression hose or see me do my gyrations to get them up.  They are 50lbs of pressure, so they are very tight and do not go up easily.  I have this issue all year long, so not really a difference weather people can see my disability or not.

I wanted to bring up the two topics above, because I am disabled and in the winter, while my arms and legs are covered, most people do not know I am disabled.  There are millions of people that are disabled, but you can not see any physical sign of their disability.  They have the parking passes because their doctor has given it to them based on their diagnosis and they do have to be renewed every couple of years, to make sure the disability still exists.  Like anything else, some will get these passes fraudulently, but the point is you can't see all disabilities so making an assumption that anyone that hops out of their car parked in a handicapped space is scamming the system would be wrong.  I hear comments sometimes in the winter, you know the ones where they are loud enough for me to hear, and I always want to tell them I would give up my parking pass anytime if my disability would go away with it.  This is not a perk of being disabled, believe me, but a necessity that I am thankful for all the time that I have to help me through my day.

Well, what a difference shorts and a short sleeve shirt make,  I kind of get a whoa that's right everyone can see my disability the first day out after the winter coverup.  I made a choice when I was first diagnosed that  I would not cover up my compress hose, like others have told me they did because they were embarrassed by them.  Wearing my hose is more comfortable in shorts, as opposed to having long pants over my thick compression hose, so I love when the weather changes and allows the shorts to come out.  Just the first day out in shorts is a kind of shock with all the questions and stares, then it is no big deal and it is not a bad shock, it is a good I can share what lymphedema is when people are curious and ask.

When you child asks "mommy what is wrong with that person"  I am really OK with you coming up and asking or allowing them to ask me and I will explain it in their terms or you can explain that sometimes people have medical problems and need different things.  I always feel so bad for the child when a parent says shhhh we don't talk about that or quiet them down, instead of answering their questions.  I had to explain to my kids what was wrong with me and of course I expect your child may have questions.  To be honest it makes me feel weird when someone shhh  a child and they are pointing at me, instead of answering the child's question.  I am me and I am just like you with a medical problem and don't you remember a time when someone pointed to you as a kid and whispered, well it is the same thing when your child points and ask a question, but you shhh them and hurry away, address it and move on and your child will be better for it.  Along the same lines, if you have a question, ask me.  Most disabled people are more than willing to answer a question as to why they have something on or what they have, because when you do you allow us to share information that you will file in your mind and may pull back out for a friend or family member that might have the same systems.  My disability is less heard of so not many people know about it, so when I can educate someone about it I love to share the information.

I am sharing on this blog with hope to bring up things that you may think of but don't want to ask someone with a chronic illness or by sharing make it easier for you to ask someone with a disability a question that you have because this blog makes you comfortable asking.  I welcome any questions you may have about lymphedema or living with a chronic illness.

Lisa